Before the War

So, went in for the EGC tests today.  They wire you up and basically electrocute you in various points to check your 'wiring' to make sure everything is working ok. It's part of the on going testing to figure out why my hands and feet still have sometimes annoyingly serious 'pins & needles' sensations.  I personally feel it is the Cyclosporin, and it continues to point to that, but the Dr.'s want to be certain. After many 'electro shocks' they feel that everything is working as far as the wiring is concerned.  I am pretty certain now that I would not enjoy being tasered.

Sooo, what's up ? Saw Dr. N last week on Wednesday afternoon.  The appointment was for 4, and I got in about 5:30.  I was in at LBMT before that for bloodwork.  If everything goes well and I stay the course, that will be my last visit to the LBMT.  I am now going to the local clinic weekly for a full bloodworkup. I am back in to see Dr. N on the 24th, and in to see the Neurologist on the 12th to see if they can figure out what is the deal with the pins & needles I continue to get in my hands and feet.  Sometimes it's pretty bad. I am still on the same drug dosages from my last visit, so no movement there, but no further GVHD signs either.  Creatine was creeping up a bit last week, so they want me to make sure I drink more. I've been forcing myself to do more physical activity.  I jumped up a few days ago to try and see something on a top shelf, and quickly realized how much the prednisone has messed up my upper leg muscles.  It's an up...

Went in for my LBMT appointment today. Came out missing a hickman lline :) I will be getting my bloodwork at a local clinic now, but it will mean needles every time, and the bruising that goes with it, but it's a good trade. So far, so good.

Once again, I haven't been posting enough.  Sorry. Cancer Dude Stuff  Things are getting better every day. My energy level is up, and I am active the entire day, most days.  In the late evening, crappy stuff starts to kick it, but it is no where as bad as it was just a month ago. My most recent appointment was April 6th.  I was hoping that they would remove my hickman line, but Dr. Mary didn't want to call the ball on that, and was unable to get confirmation from Dr. Nevill. I am back on the high blood pressure meds.  They want it below 150/90, and I was running 154/90.  They give me a bit of a head ache, and some minor light headedness at their peak, but nothing major and it only lasts about an hour. Still on all the drugs, and still at the same levels for the last month.  Prednisone, Cyclosporin, anti-viral, anti-fungal, magnesium, potasium, calcium, vit-d, and anti-pneumonia.  There was a bit of GVHD rashing last time I saw Dr. ...

Once again, I have been neglecting my blogging duties.  I tend to seriously crash starting in the afternoon, and it just gets worse into the evening.  I try in the morning to get everything I need/want to do in the day done, and blogging doesn't make the short list very often. Fatigue, nausea, and just feeling like crap in general.  Like a bad cold. I have no desire to eat, and it doesn't help that my taste buds are not working. Good news is that I am loosing a lot of extra weight.  This is a great diet plan. Unfortunately, the Dr.'s do not share my diet plan view, and they want me back on the prednisone (15mg daily) because they feel that the symptoms are from from chronic GVHD. I really didn't want to go back on the prednisone, as I feel the symptoms of the GVHD are less then the symptoms from the prednisone, but after a few really bad evenings I relented.  The numbness in the hands and feet are a bit worse now, and it is affecting my sugar levels aga...

So, I was in Friday for my 'bonus' appointment to check on my kidneys.  Everything was looking good for just a quick bloodwork, and then home.  They didn't even have me booked for fluids. But, I forgot, it was Friday.. Results came back, and the kidneys were doing much better, but the Hemoglobin was down to 81.  For all you LBMT fan's out there, you know what that means ! Transfusion ! Of course, I don't have up to date blood cross match, and they didn't expect I would need it, so they didn't draw blood for one back at the start of my appointment. I could see the writing on the wall.  I was going to be on the road before noon.  Now, it certainly looked like late afternoon. Sure enough, by the time the cross match was done, and the blood arrived, and the two bags slowly dripped in, it was 5:15.  Rush hour.  On a Friday. Yes, I still feel like crap.  Fortunately sitting in the truck, driving, is not very physically taxing, and pretty c...

Prednisone is over now.  I did the last decrease to nothing on Friday, so that I would have the weekend to suffer the effects, and so that if anything went really wrong it would be there for my Monday appointment.  I had some pretty bad joint and muscle pain, and crippling fatigue for most of the weekend.  The pain was pretty much gone by Monday, but the fatigue is still there. The fatigue is probably caused by lack of eating as the taste buds are gone again along with the desire to eat. Got up early for my Monday appointment, and the commute was crazy light.  The Port Man bridge was only backed up to Johnson Hill - like a holiday or early Sunday morning.  It was weird.  I got in about an hour before my appointment.  It gave me an opportunity to go to the special pharmacy to pick up some more Cyclosporin. Got in to my appointment at LBMT, they took my blood, and since there were no fluids scheduled, the nurse was wondering if I wanted to head off...